2021 CP Education Day

Cerebral Palsy in Aotearoa New Zealand:
Early identification, surveillance and beyond
Cerebral Palsy Education Day
Friday 9th of July 2021 via zoom

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond
Kia ora koutou katoa,
Our cerebral palsy education day is targeted for health professionals and whānau / people with lived
experiences to share findings and developments from a range of cerebral palsy related projects and
developments. The focus of this virtual education day is driven by the ‘CaPTuRE: Cerebral Palsy Translating Research on Early identification’ study, which aimed to capture current practice in early
management of cerebral palsy in New Zealand, and support information sharing around best practice.
The day also includes the Launch of the NZCYCN CP Clinical Network early diagnosis and intervention best
practice recommendations, and includes an exciting session on Communication, with and between
families, health professionals and engaging with Māori whānau. At the conclusion of the day, the session
focuses on preventative surveillance strategies, including the International CP Respiratory Guidelines
workshop, led by Dr Noula Gibson (Perth, Australia), and an important update of the AusACPDM Hip
Surveillance Guidelines.
We would like to thank and acknowledge the Starship Foundation for supporting this work, as well as our
collaborating partners of health professionals and community members and people with lived experience
of cerebral palsy across New Zealand, who have honoured us with their work, sharing of information and

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond
Session 1



Kaumatua Fraser Toi

Opening Karakia

Prof Susan Stott


Welcome and introduction

Dr Malcolm Battin, Dr Sian Williams,
Dr Anna Mackey, Alexandra Sorhage

Current practice on the identification , early management and hip
surveillance for cerebral palsy in Aotearoa

Session 2

Steps to


Dr Angelica Allermo-Fletcher,
Dr Sneha Sadani


Session 3


Friday 9 July 2021

Panel discussion with Prof Alicia

Launch of the PSNZ CP Clinical Network Best practice recommendations
for CP Diagnosis


An overview of the clinical signs, and key tools aiding detection of
cerebral palsy: MRI, GMs & HINE

Session 4

and beyond


Amy Hogan

Communication with families: the family experience


Dr Jimmy Chong

Communication and reporting: key information and tips for clinicians


and reporting

Dr Karen Wright

Engaging with Māori whānau – mahi with the New Zealand Cerebral Palsy Register


Dr Noula Gibson, Dr Kate Langdon,
Dr Monica Cooper

Respiratory Health for Children with cerebral palsy workshop


Dr Pam Thomason, Meredith Wynter

New 2020 AusACPDM Hip Surveillance Guidelines


Prof Susan Stott

“And beyond’: Where to from here?


Note: Each session includes audience
discussion dispersed throughout

Virtual housekeeping

Portions of the program will be recorded with the intent to be made available at a later
date; however, we thank you in understanding that we will be unable to do this for the
whole program due to consent and permission limitations.
Each session will include time for questions and discussion, please feel welcome to type any questions
within the chat function throughout the session and / or unmute yourself and turn on your video
during question time.
We ask that you please mute your microphones if you are not speaking and try to keep background
noise to a minimal when you are speaking.
Each session will be broken up with a 30min break.
Your zoom link to join the session can only be used at one location at a time. If you have registered
using the Group Site Rate but your group will be split across sites, please contact us.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Friday 9 July 2021

Session 1 Current practice

Prof Susan N Stott, Dr Sîan Williams, Dr Anna Mackey, Dr Malcolm Battin and Alexandra Sorhage
Prof Stott is Service Clinical Director, Paediatric
Orthopaedics; Clinical Lead for NZ CP Register and
Chair of the NZ Cerebral Palsy Clinical Network.
Sue was recently awarded an AusACPDM
transformative practice award for inspiration in
translating research into clinical practice. She has
led multiple research projects on interventions
and outcomes for children with CP in NZ and is
the lead investigator for the CaPTuRE
project and Respiratory Health in
tamariki with CP project, funded
with Starship Foundation support.
Email: s.stott@auckland.ac.nz

The opening session will report back on current practices and experiences
around the diagnosis and early management of cerebral palsy. This session will
discuss key findings from the CaPTuRE project (Cerebral Palsy: Translating
Research on Early Identification), funded by Starship Foundation, in addition to
related work on use of cranial imaging in the neonatal unit and early hip
surveillance practices. Outcomes from a range of research methodologies will
be discussed, including family and clinician surveys; clinical audit; co design and
data linkage.
This information helps to define where we are now in our practice in
Aotearoa New Zealand and open the discussion on where we aspire to be in
the future.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions

Dr Sîan Williams


Dr Sîan Williams is a Senior Lecturer at the School of Allied
Health, Curtin University, and post-doctoral fellow with the
Australasian Cerebral Palsy Clinical Trials Network, based in
Auckland New Zealand.
The key focus of Sîan’s work in New Zealand has centred on the
early detection of cerebral palsy, supporting the training and
implementation of key diagnostic tools for earlier detection, and
the generation of new knowledge around current practice- with
a large emphasis on involving the family perspective
and identifying potential inequities in service access.
Sîan is a Board member of the AusACPDM.
Email: Sian.Williams@auckland.ac.nz

Dr Malcolm Battin
Dr Malcolm Battin is a neonatologist who trained in the UK
and Canada before moving to New Zealand in 1997. For 11
years he held a joint appointment with the University of
Auckland before taking a full-time hospital role in 2008.
His research interests are broad but include a focus on
determinants of neonatal outcome and neonatal
neurology, particularly neonatal encephalopathy.
Email: MalcolmB@adhb.govt.nz

Dr Anna Mackey

Dr Anna Mackey is a Research Officer with the Paediatric Orthopaedic
service at Starship Children’s Health, working with the New Zealand
Cerebral Palsy Register and Cerebral Palsy related research projects.
Anna has a background in paediatric physiotherapy, trained in the General
Movements Assessment tool and is a trainer for the
Hammersmith Infant Neurological Examination for the
CaPTuRE project. Anna is a member of the Paediatric
Society of New Zealand, Cerebral Palsy Clinical Network.
Email: amackey@adhb.govt.nz

Alexandra Sorhage
Alexandra Sorhage is a data and research support officer in Paediatric
Orthopaedic service, Starship Children’s Hospital and with the New
Zealand Cerebral Palsy Register. She is also a representative on the CP
Clinical Network Group and the AusACPDM Communications Committee.
Having completed a PGDipHSc in Health Informatics and Master’s in
Health Science, she has developed a keen interest in using health and
Register data to understand areas for improvement in
health outcomes for children with CP. Alexandra received
the 2019 Wilson and Sweet Fellowship, supporting
completion of her Masters thesis “Investigating Current
Hip Surveillance Practice in a Tertiary Children’s Hospital”.
Email: asorhage@adhb.govt.nz

Session 2 Steps to identification

Friday 9 July 2021

Dr Angelica Allermo-Fletcher and Dr Sneha Sadani, with Panel discussion chaired by Professor Alicia Spittle
In 2017 the landscape of diagnosing CP changed dramatically when an international literature review was published with
recommended diagnostic pathways for early diagnosis of CP, enabling diagnosis before 3 months of age.
Based on this evidence, we are now launching the NZ Best practise recommendations for early diagnosis of CP, intervention and
surveillance, adapted to the clinical settings in Aotearoa, with the hope to improve equity around diagnosis and access to
intervention, and improve the future for infants and children with Cerebral Palsy and their whānau.
The aims of the Best practise recommendations are to provide an easy to follow clinical guide for early diagnosis of CP before and
after 5 months of age, and help reach the Australia New Zealand Cerebral Palsy Strategy’s target of 70% of children with CP being
diagnosed before 12 months of age.
We will also provide an overview of the recommended criteria for entering the different CP diagnostic
pathways and the key clinical diagnostics tools.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions


Dr Angelica Allermo-Fletcher
Dr Angelica Allermo Fletcher is a neonatologist working in the
Neonatal Intensive Care Unit at Wellington Regional Hospital
and is a senior clinical lecturer at the University of Otago .
Together with Dr Sneha Sadani, she is the co-lead for the
CP Clinical Network Early diagnosis and intervention
working group. She has a keen interest in clinical practise
improvement, particularly in neuroprotective and neuro
supportive neonatal intensive care practises, and is
trained in General Movement Assessment. She is part of
the multidisciplinary team developing an early diagnosis of CP
pathway for high-risk infants in Wellington and associated
regional hospitals.
Email: angelica.allermofletcher@ccdhb.org.nz

Dr Sneha Sadani
Dr. Sneha Sadani is a Paediatrician at Waikato Hospital and a
Honorary Senior Lecturer in Paediatrics Child & Youth Health,
University of Auckland. She specializes in Paediatric
Neurodevelopment and Disability. Working as part of a
multidisciplinary team at the Child Development Centre, she
liaises with her colleagues in NICU, Neurorehabilitation and
Neurology. Waikato CDC has developed pathways
for early diagnosis of Cerebral Palsy & a referral
system from NICU involving the visiting
Neurodevelopmental teams & Early
Intervention providers.
Email: sneha.sadani@waikatodhb.health.nz

Professor Alicia Spittle

Professor Alicia Spittle (Ngāi Tahu) is a paediatric physiotherapist and international leader in early detection of motor impairments
and early intervention for infants at high risk of developmental impairments. Alicia is Chief Investigator and co-chair of the
Policy & Practice Translation subcommittee for the CRE in Newborn Medicine, and is the Associate Dean Research for the
Faculty of Medicine, Dentistry and Health Sciences at the University of Melbourne. She has had an outstanding research trajectory
since completing her PhD in 2008, having received over $9 million in research funding, published in the leading paediatric
and physiotherapy journals.

Session 3 Communication and Reporting

Friday 9 July 2021

Speaker: Amy Hogan
This talk will provide feedback from New Zealand families and Whānau about the family perspective around the diagnosis and
early management of cerebral palsy - how they seek honest, open, ongoing communication, they want to be informed and
supported. This work is part of a bigger project to inform better communication for individuals and families and will also draw
upon evidence from international literature.

Speaker: Dr Jimmy Chong
What does it mean to have cerebral palsy and how can we approach these discussions with families? Cerebral palsy is a diverse
condition, where it is often helpful to stratify children into subgroups to describe and communicate clinical information. This session is
an opportunity to share ideas and knowledge about the discussion of the diagnosis of cerebral palsy with families, the use of
classification systems (including the GMFCS), along with a focus on function and participation.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions

Friday 9 July 2021

Session 3 Communication and Reporting

Speaker: Dr Karen Walker
The NZCPR is working in partnership with researchers from Te Kupenga Hauora Māori, University of Auckland to improve
health outcomes for Māori with CP.
As part of this mahi, HealthLiteracy NZ led hui involving 12 Māori whanau with lived experience of CP. The aim of these hui
were to seek feedback on the Register’s resources and improve recruitment of Māori to the Register.
Relevant Māori models of health will be used to explore effective engagement with Māori. Kaupapa Māori principles provide
the opportunity to embed Register processes that align with te ao Māori, establish and maintain good relationships, and
implement actions to achieve Māori health equity.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions


Amy Hogan
A researcher and writer
with the Cerebral Palsy
Society of New Zealand,
Amy’s primary role is to
represent the Society in all areas
of research. Amy lives with Cerebral Palsy and is
passionate about this area of work. Her
academic interests include patient-practitioner
interaction, communication and severe disability,
multiple life transitions promoting and wellness
in cases of chronic illness. In 2021, I started my
Master's thesis on health narratives in public
domains online. Her professional interests are: 1)
The Cerebral Palsy Clinical Network; 2) Cerebral
Palsy through the lifespan and adult research; 3)
Knowledge translation and effective science
communication to individuals and families; 4)
Using research and data as
an effective advocacy tool for
families and people living with CP.
Email: amy@cpsociety.og.nz

Dr Jimmy Chong
Dr Jimmy Chong is a rehab paediatrician
working in the Starship Paediatric
Rehabilitation Service. He undertook his
medical training in New Zealand, before
completing a fellowship in rehabilitation
medicine through the Sydney Children’s
Hospital Network. Jimmy has a special
interest in healthcare delivery and
improving outcomes for children with
cerebral palsy.
Email: kwanghuic@adhb.govt.nz

Dr Karen Wright
Dr Karen Wright (Ngāi Tahu) is a Senior
Lecturer at Te Kupenga Hauora Māori,
University of Auckland, public health
medicine specialist and has previously
practiced as a general practitioner. Her
research interests include understanding how
health services and health systems can
transform to align with Te Tiriti o Waitangi
and support Māori health equity. She is a
mother to two children and aunty to many
Email: kwright@auckland.ac.nz

Session 4 Surveillance and beyond

Friday 9 July 2021

Dr Noula Gibson, Dr Kate Langdon, Dr Monica Cooper
Respiratory illness is the leading cause of death in people with CP. Whilst risk factors for the development of respiratory illness in
children have been identified, causality has not been established. Often, respiratory illness in CP is not managed until symptoms
become persistent. Respiratory management in CP has been constrained by uncertainties around the efficacy of interventions for
prevention and treatment and the need for multidisciplinary and inter-service team management. Different practices exist between
services, within countries and between countries based on clinical priorities and resources.
The consensus statement to be used in the workshop has been developed according to the international standards for assessing the
quality of practice guidelines (AGREE II), using the best available published evidence, expert consensus and consumer involvement.
In this workshop we will describe the process of development of the consensus statement as it applies to all relevant clinical
disciplines and consumers; present the recommendations of the guideline and their rationale and provide practical application of the
recommendations using clinical case examples.
Note: This workshop has interactive discussion, be ready to turn those cameras and microphones on to participate!

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions


Dr Noula Gibson
Dr Noula Gibson, PhD, has 30 years’ experience as
a physiotherapist working with children with
acquired neurological conditions. She is currently
the Research Coordinator for the Physiotherapy
Department at Perth Children’s Hospital, providing
leadership to strategically direct the research
activities of the physiotherapy department.
Her research interests and publications are in
evidence-based practice; intervention efficacy;
promotion of physical activity capacity and
participation; and prevention of respiratory illness
in cerebral palsy.
Noula currently holds a grant funded research
position investigating respiratory interventions for
cerebral palsy. Noula has coauthored two evidence based
clinical guidelines one for hip
surveillance in cerebral palsy
and the recent consensus
statement for the prevention
of respiratory illness in
cerebral palsy. She also has
an interest in registry studies
and co-authored the Cerebral
Palsy Classification form currently
in use by the Australian Cerebral Palsy Register.

Dr Monica Cooper
Dr Monica Cooper is a Consultant General Paediatrician in the Department of
Neurodevelopment & Disability at the Royal Children’s Hospital in Melbourne. Monica
works with children who have severe physical and intellectual disabilities. Monica leads the
saliva control clinic.
Monica is currently undertaking a PhD with The University of Melbourne /
Developmental Disability and Rehabilitation Group at MCRI, studying the
Epilepsies of Cerebral Palsy. Monica is a co-author of the consensus statement
for the prevention and treatment of cerebral palsy. Monica has presented her PhD
related work, as well as the respiratory consensus work at national and
international conferences and symposia.

Dr Kate Langdon
Dr Katherine (Kate) Langdon is Consultant in Paediatric Rehabilitation Medicine at
Kid’s Rehab WA, Perth
Dr Kate Langdon Children’s Hospital, working in multiple clinical programs
(including the early intervention, acquired brain and spinal cord injury
programs) and is an active researcher.

Kate was a founding member of the Better REspiratory and Airway Treatment
and HEalth in Cerebral Palsy (BREATH-CP) multidisciplinary research team
(est.2011) whose goal is to reduce the burden of respiratory disease and improve
quality of life in young people with CP. As a member of BREATHE CP Kate has coauthored 12 publications relating to respiratory illness in CP including the consensus statement.
Her other areas of research interest are acquired brain injury, cerebral palsy, spasticity
management, mental health, sleep and the neurocognitive abilities of children with disabilities.
Kate is a strong advocate of evidence-based care and is a co-author of the recent updated “State of
the Evidence Traffic Lights 2019: Systematic review of interventions for preventing and treating
children with CP.”

Session 4 Surveillance and beyond

Friday 9 July 2021

Dr Pam Thompson and Meredith Wynter

Children with cerebral palsy are at risk of developing progressive hip displacement. Every child should be referred for hip
surveillance at the time cerebral palsy is identified.
Early detection is an essential part of the strategy for prevention of further hip displacement, hip dislocation and its
sequelae of pain, reduced function and decreased quality of life. ‘Hip surveillance’ is the process of identifying and
monitoring the critical early indicators of hip displacement.
The Australian Hip Surveillance Guidelines for children with Cerebral Palsy (2020) document the recommended process for
screening, monitoring and triaging to orthopaedic services as part of the overall prevention of hip dislocation. This talk will
provide a brief update to the changes in the most recent version of the guidelines.

Cerebral Palsy in Aotearoa New Zealand: Early identification, surveillance and beyond

Note: Each session includes time for
audience discussion and questions


Meredith Wynter
Meredith Wynter is a Senior Physiotherapist and QLD
state coordinator of the cerebral palsy Hip Surveillance
program. A previous board member of the AusACPDM,
Meredith is an active member of the cerebral palsy
research community and expert in clinical practice,
having also published several studies on hip surveillance
of children with cerebral palsy as lead author, including
the Australian consensus statement on Hip Surveillance
and subsequent guidelines.

Dr Pam Thompson
Dr Pam Thomason is Senior Physiotherapist and
Manager of The Hugh Williamson Gait Analysis
Laboratory at The Royal Children’s Hospital, Melbourne.
Pam is particularly interested in musculoskeletal
outcomes in young people with cerebral palsy and how
this impacts their function and participation. Pam has a
strong research background and clinical experience in
gait analysis and management of musculoskeletal
pathology in children with cerebral palsy.
Email: pam.thomason@rch.org.au

Email: Meredith.Wynter@health.qld.gov.au

Access the guidelines at https://www.ausacpdm.org.au/resources/australian-hip-surveillance-guidelines/


A sincere thank you to all of our families and health professionals involved in our research and
information sharing across New Zealand and Australia.

The Starship Foundation and the Athlae Lyon Award

New Zealand Health Research Council (HRC) Research Activation Grant

AusCP-CTN CRE: The Australasian Cerebral Palsy Clinical Trials Network, Centre for Research
Excellence https://cre-auscpctn.centre.uq.edu.au/

The CaPTuRE team: N Susan Stott, Sian Williams, Anna Mackey, Nichola Wilson, Malcolm Battin,
Alexandra Sorhage, Amy Hogan, Corrine Jordan Watson, Colette Muir, Alicia Spittle

The NZCYCN: https://www.starship.org.nz/health-professionals/cerebral-palsy-clinical-network

The Cerebral Palsy Society of New Zealand: https://cerebralpalsy.org.nz/

The New Zealand Cerebral Palsy Register: https://nz.cpregister.com/

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